Still a long way to go on breast cancer treatment, despite Angelina Jolie

In 1983, it was still so rare to talk about breast cancer in public — and even taboo — that my stylish, image-conscious maternal grandmother wanted most people (even her own granddaughters) to think that she was dying at age 58 of lung cancer.

Considering that she smoked three packs of cigarettes a day — Tareytons and Virginia Slims, the cigarettes with the sexy slogans — that wasn’t so out of the realm of possibility. And in the short time from diagnosis to death, after we’d been sitting in a darkened room for days listening to her raspy breaths, the breast cancer had so eaten away her lungs and everything else that it didn’t even matter.

But 25 years later, it would matter to me.

Because I didn’t know that my grandmother’s primary cancer had been located in her breast, when I found my own lump in 2005 when I was 39, insurance wouldn’t pay for genetic testing right away. “You’re so young!” the doctors at Kaiser Permanente said. “You have no family history!”

And so I wouldn’t find out until well after I’d already undergone the recommended lumpectomy, chemotherapy and radiation.

Had I known my grandmother had breast cancer, my doctors could have pushed for the genetic testing from the start. It was only later that an aggressive oncologist started to question the so-called “lung cancer” and pushed for the testing. While it was extremely unlikely that I would have either of the rare genes that would increase my cancer risk — and even less likely both genes — the information would have better informed my decision.

Had I known, I almost assuredly would have done what actress Angelina Jolie did and opted for a bilateral mastectomy from the get-go, as my chances of getting breast cancer were, like her, about 87 percent.

Had I known, right now I likely would be typing this with arms that frame a pair of perky implants instead of a hollowed-out rib cage.

Unfortunately, seven years later, when my cancer came back — as it so often does when you have not only the BRCA1 but also the BRCA2 gene mutations, as I do — I’d been radiated beyond the ability to have implants. Radiated tissue typically rejects implanted materials.

My only choice, then, would have been more invasive surgeries and reconstructions. If you don’t get implants but you still want something approximating breasts, you can have them constructed from your stomach tissue, where skin and fat are removed from your abdomen and veins are rerouted to keep the tissue alive. While most of the time the surgery is successful, it is not without risks, and some of my muscles would have been compromised.

Ultimately, I decided that activities like mountain biking and river rafting were more important to me.

As hard as it is not to have breasts anymore, I do know how lucky I am. I’m alive, and I have health insurance. However, I wish I’d been given more choices at the time, choices that could have been made with more and better information.

Of course, I was also lucky that genetic testing was even covered during any part of the process. For many women, it’s not. The full test costs $3,000, an expensive undertaking, and that’s after we had gotten past the mammogram, the ultrasound, the biopsies.

The Affordable Care Act made mammograms accessible to a larger part of the population after Aug. 1, 2012, but according to the American Cancer Society, health plans that were in place prior to that date still vary wildly in their coverage nationwide. (According to the ACS, Colorado’s coverage, by the way, stipulates a “baseline for ages 35-39, every 2 years for 40s, each year 50+, or physician recommendation.”)

A study released just a few weeks ago found that, for unknown reasons, women of color experience treatment delays related to breast cancer treatment, and poor women and women without private insurance have lower five-year survival rates.

But how can women have choices if they don’t have a way to pay for them?

So now that headlines are blaring about someone as high-profile as Jolie not only openly talking about having breast cancer, but also gene mutations and prophylactic mastectomy and the many options — immediate reconstruction and sparing skin and nipples — it’s possible that we’ve finally reached a point where we can start having the conversations about genetic testing before crucial decisions are made.

For every woman.

My chances of being able to pay for the treatment weren’t nearly as good as Jolie’s, but they were better than many. Insurance companies need to step up and give women all, not just some, of the information and options they need to be the healthiest they can be. While it’s true that right now the two known genetic mutations are rare and most breast cancers are not caused by them, more mutations are being studied, and more will be identified. Women should never have to choose between putting food on the table and body parts.

We’ve come a long way, baby, but we’re not there yet.

Kyle Wagner (travel@denverpost.com) is the travel editor of The Denver Post.

Thank you for highlighting how much we must improve care for everyone, not just people within the “right” age group or race.
Women need to know that the gene mutations in breast cancer you mention also indicate a higher risk for ovarian cancer.
The symptoms of ovarian cancer can be the combination of feeling full after eating very little, bloating, frequent urination and pain. The constellation of these symptoms as well as family history should be discussed with a gynecologist.

Eliza Cross

Great column. Thank you for your candor, for explaining the option so clearly, and for sharing your own experience so transparently. May your tough choices lead to a long, healthy, happy life. xo

Vincent Carroll is The Denver Post's editorial page editor. He has been writing commentary on politics and public policy in Colorado since 1982 and was originally with the Rocky Mountain News, where he was also editor of the editorial pages until that newspaper gave up the ghost in 2009.

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